In a campaign victory for Big Brother Watch, medconfidential and others, the care.data scheme has been delayed for six months.
This is not the end of the issue. We have significant ongoing concerns regarding the care.data scheme, both in terms of how patients have been told about what is happening and the long term privacy implications of creating a new database and releasing data that could be used to re-identify patients.
We welcome the fact that NHS England has recognised its efforts to communicate the scheme have been inadequate, something we have repeatedly warned about, not least the use of a junk mail leaflet to households that did not mention any of the risks involved.
Simply, however, NHS England had one job – to ensure patients and GPs were properly aware of the scheme and could make an informed choice about participation. Despite more than a year to achieve this, they have totally failed to do so. NHS England has serious questions to ask about its strategy that has tried to railroad through a significant change in how our medical records are used.
According to NHS England, the delay will: “ensure that concerns are met … to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to.”
In recent weeks, individual GP’s, the Royal College of GP’s, the British medical Association and patient watchdog Healthwatch England, among others, have all voiced their concerns about the scheme.
The simple point is that NHS England failed to properly communicate to patients or GPs what this new database involves, how it affects medical records and what the risks are. The scheme’s benefits are no justification for not properly informing people what will happen and a delay is the right thing to do to maintain public confidence and ensure people have an opportunity to opt-out.
There are few people who don’t acknowledge the benefits of medical research, yet patients have shown that they will not be complacent when it comes to who can access to their medical records. Our medical records contain some of our most private information and any changes to how they are used should not be rushed into. NHS England should now write to patients individually, including an opt-out form, explaining the scheme and allowing people to make an informed choice about what happens to their medical records.
In future, it should the the norm that these kind of changes are done on an opt-in basis. We expect such a situation would mean a far more thorough effort from NHS England to keep the public informed, while also fulfilling the principle of giving patients control of their medical records.